Jan. 22-- At 15 months, Opal Lang was reaching the typical toddler milestones like finally making it across her suburban living room without falling.
Then at a routine checkup, her pediatrician noticed when she cried out or screamed, her heart rate was irregular, said Dr. Phil Thrush, a doctor who specializes in cardiology at Lurie Children's Hospital in Chicago. In the months that followed, Opal went into cardiac arrest, had machines hooked up to her to keep her heart pumping and celebrated her second birthday in her hospital room.
Now, she is among 130 children between 1 and 5 years old across the country who are on a waiting list for a heart transplant, according to the United Network for Organ Sharing, a nonprofit organization that has a federal contract to manage the nation's organ transplant system. In Illinois, there are 215 people waiting for heart transplants. Opal is among 17 patients being treated by doctors at Lurie who are in line for the operation.
Waiting for a heart donation can be agonizing for parents, Thrush said. The list shifts every time a donor is identified, and the list of candidates gets reshuffled based on how long they've been on the list and their proximity to the donor, adding to the uncertainty, he said.
For Opal's parents, Priscilla Lang, 34, and Tyler Lang, 36, it helps to talk to the parents of a child who has gotten a heart transplant, particularly after rough days.
"It's easy to get tunnel vision," Priscilla Lang said. "(To think) oh my God, are we ever going to get out of this?"
Their daughter's heart condition has upended their lives, and they've become part of a world where parents spend most of their time shuffling between a temporary home and their child's hospital room. The Highland Park family became a single-income household after Priscilla Lang gave up her practice as an acupuncturist to monitor her daughter more closely.
"It's just a waiting game now," Tyler Lang said. "The whole experience is a roller coaster. We've made it this far. Now what do we have to worry about (next)?"
When Thrush first examined Opal last spring, her heart's pumping chamber was bigger than it was supposed to be, and it was pumping less blood than was typical, he said.
"Her heart rhythm was very abnormal, and we see that sometimes with hearts that are enlarged and not squeezing that well," Thrush said.
Doctors aren't exactly sure what caused Opal to develop the condition, but they think it could be a genetic abnormality. Tests are not available to confirm that possibility.
"It's the best estimation or the best diagnosis that we have right now," Thrush said. "Ultimately, we may never know. For about a third of the kids, we don't find a good answer."
Last year during a cardiac catheterization, a process used to diagnose and treat heart conditions, Opal's heart stopped, prompting doctors to insert an emergency pacemaker. Eventually she was able to go home but was later hospitalized two more times. Priscilla Lang said her daughter looked like she was having a seizure during the two episodes of cardiac arrest. Each time, though, she quickly regained consciousness.
In early December, Opal had another episode, but this time she didn't immediately regain consciousness. Priscilla Lang had to give her daughter CPR until paramedics arrived. A CT scan later showed the girl had a minor stroke, Priscilla Lang said.
"At this point, we've been here for two weeks, and Opal has not been out of sedation and paralysis other than some twitching," she said of the December scare. "And she's been through over an hour of compression and been defibrillated many times. She's now had a minor stroke, and they couldn't give us a base line of how she was going to be when she woke up."
The Langs spent the holidays at Lurie, slowly watching Opal react to being lifted from sedation and paralysis in the days after Christmas.
WAITING FOR A HEART
Since then, doctors placed Opal on a Berlin Heart, a pump for children waiting for transplants, which allows her to have a stabilized heart rhythm, Thrush said. Because children have smaller chests than adults, the pumps helping blood flow from her heart are outside her body, he said.
Opal is connected to the machine through two tubes, meaning she will remain hospitalized until she gets a heart transplant. But it gives her limited flexibility to do therapies that will make her a better transplant candidate, Thrush said.
"That's really the benefit of having a device like this, it allows her to be up and mobile and do things that most other kids would do," Thrush said.
On a recent afternoon, Opal was in a good mood as she smiled while cradled by her mother. Priscilla Lang helped her hold a wooden box as they practiced fitting various shapes into it.
"Oval, almost like Opal," Tyler Lang said as he handed her a blue oval to insert into the box.
The couple said it feels like they have an infant again because Opal has to learn how to walk and work on her motor skills.
"When people have kids, there are all of these milestones that you hit and we've hit them all," Priscilla Lang said. "And now, they've been taken away from us, and we are going to hit them again."
A pink shark and a penguin are among dozens of stuffed animals on the windowsill of Opal's hospital room overlooking looming skyscrapers. Teenage Mutant Ninja Turtles figurines that once belonged to Tyler Lang are among the toys in Opal's room. Some of the toys are from family members who have visited in the weeks since she's been hospitalized while others are from strangers who have heard about her medical journey, such as the woman who sat next to her aunt on a plane.
On Christmas Eve, Cardinal Blase Cupich visited and prayed with the family. A friend of Priscilla Lang's created a Facebook page, Support Opal, to chronicle her journey. One video shows the girl smiling as she opens up a gift, a stuffed, bright blue Grover from "Sesame Street."
While the couple basks in each of Opal's accomplishments, they know there's a long recovery process that awaits them when she does get a heart.
"(It's) like wanting to celebrate but you are not at the end of it," Priscilla Lang said. "Like, even getting a heart transplant isn't a perfect option. There's a doctor who says quite often you are just trading one problem for another."
Now, as the sedation and paralysis have lifted, Priscilla Lang and her husband are starting to see their daughter's personality re-emerging. Opal has smiled at her parents, recognized the family dog Booboo in a video and identified her own tongue.
"Every night I was praying for a miracle, and in my mind the miracle was the heart," Tyler Lang said. "Right, to get a heart for Opal, but really the biggest miracle is that after everything she's been through, she's still Opal."
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